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It's all trial and error, isn't it?

Month: July 2015

If you haven’t already, I strongly suggest you trot over to the iPlayer and watch a BBC Three drama called Don’t Take My Baby.

It is based on the true story of a disabled couple and their fight to keep their first baby. She has a muscle wasting condition and he has a degenerative visual impairment.

As much as some parts of the drama were probably not exactly as they happened, and I do think a lot was over dramatised, a lot of it also rings true for so many disabled parents. It was a little too close for comfort at times and I’d be lying if I said that it didn’t upset me. It did. I felt angry and hurt and ashamed and tired that this kind of treatment of people with disabilities still happens today.

The beginning of the programme shows the couple as they go into hospital to have their baby, not knowing whether the mum, Anna, would even survive the caesarian section under general anaesthetic. They are scared, anxious, excited and apprehensive. The feelings that I’m pretty sure EVERY new parent goes through when they are about to give birth. However, unlike other couples, this couple then leave hospital and go home without their baby. Whether this actually happened in the real family’s case I’m not sure. I think social workers would have lost their jobs by making a decision to disallow a couple the custody of their baby after birth, and on the spot in that way, when their presumed incapabilities were just that, presumed. But as far as the story goes, they are given no chance to show whether they can look after their own child and are instead given daily ‘visitation’ rights under supervision at the hospital.

For those who know me and who have watched this programme, you might agree that my physical capabilities as a parent are similar to those depicted and shown by the actor/mum (FYI, the actor has the disability. She is not an able-bodied actor playing a part of a disabled person) and to see this interpretation of what social workers do to the first stage of motherhood and of parenthood, is frustratingly accurate at times.

When we knew we were going to have our first child, I contacted adult social care well ahead of time, to ask for more help from a PA for when my baby was here so that I could carry out my role as mum, especially when my partner was at work. I was told that nothing could be done and no assessment would be made until after the baby was born. Because that seems so logical, right?! (We were later informed that this was in fact the wrong way to do things, and that it would have made the process smoother had the funding arrangements been put in place before Amélie was born. Duh.)

But as it happens, it didn’t happen the right way round. They didn’t listen. Because how could I possibly be a good judge of my own abilities and difficulties?

So. Not. Sensible.

Not sensible and not in the least bit enjoyable having possibly the most unsympathetic and unemotional social worker I’ve had the delight to come across, sat in your living room while you and your baby are covered in equal quantities of breast milk, telling you that children’s services should be involved to ensure that there is no risk to your baby. To pass the buck of a costly disabled parent to another service, another service controlled by the local government, where I’m sure at the end of the day. the money all comes from.

When it came to my recent reassessment earlier this year, my partner, fuelled by the same frustration and anxieties as me, came across a document titled ‘They Said What?’ By Jenny Morris, with the help of the Disabled Parents Network. I hadn’t realised someone who didn’t know me had written a book detailing exactly the same silly things we’ve heard from social workers….

… Okay but joking aside, it was uncanny. And hilarious; how could the same mistakes and misconceptions be happening all over our country!? Please read it.

Disabled parents are difficult people. An awkward bunch with no regard for sticking to the comfortable norm. But through no fault of their own. Not one agency or service will take responsibility for their care and so cases rarely get resolved and knowledge and experience is never shared. So the next case of a physically disabled mum (or dad, or both) due to have a baby, will be forwarded to social care services to be met with a response similar to – “oh I’m not sure about this. Janet, do you know who deals with this type?” In which case Janet will say something along the lines of “No, Beverley, beats me. Cc Children’s Services in to an email, they might know. I didn’t realise disabled people could even have babies.”

But this isn’t good enough. And we know it’s not good enough because of programmes like Don’t Take My Baby. And there will be people all over the country and possibly further who watch this and think that surely this doesn’t happen. But it does.

Luckily for me and my partner, it wasn’t discussed whether we’d get to keep our beautiful girl or see her go into foster care. I can’t think of much that would be more harrowing. Luckily for us my partner is able-bodied, but the threat of children’s services looking into safeguarding concerns was hideous and petrifying. I knew my baby was safe in our house, so why would anyone think she wasn’t? In reality, I personally don’t think there was ever an official concern about Amélie’s welfare. Midwives, health visitors and occupational therapists were collectively not concerned. The only concern was the cost of funding the extra PA hours to the adult social care section. They were safeguarding their own money and wanting someone else to pay for it.

My experience more often than not has shown me that it is a game of tick boxes and money moving than truly about the welfare and needs of the individuals that social services exists to help in the first place.

The battle is ongoing and probably will be until my children have grown up and left home. I will never be able to parent my own children without being reminded of my cost to the state, and maybe I should. I battle with myself over whether it is fair for me to have children and whether taxpayers are happy to help fund someone to help me.

This is an article that I wrote for the online magazine To Be Frank Magazine. I hope you like it.

I never really wanted to be much of a disability ‘activist’, or even associate with things concerning disability or disabled people. I didn’t see myself as part of that kind of group even though I was fully aware of the stereotype that I was, and what I couldn’t not, be a part of. I didn’t want to be that kind of person who only ever talks about being disabled, who you see barging their way through to the front of a queue in a pub “because I’m disabled”.

Because all disabled people do that, right?

I didn’t want to live alone and survive on microwave ready meals. They all do that as well don’t they?

Okay, aside from the satire, I just wanted to be a normal kid. A normal girl growing up in a normal Cornish town (oh the jokes!) and have normal friends in my normal school. And I had most of those things. I did mostly the same things other kids did: after school clubs; went to Brownies at the community centre; went to friends’ houses after school and played outside in the sun; loved going to the local theme park. I’d throw myself into the mini roller coaster cars no matter who disapproved. My disability didn’t get in the way of my childhood social life too much. I wasn’t particularly ‘popular’, in the typical modern day sense of the word but I had a few close friends. And I have those friends (I’m sure they know who they are) and my family to thank for all of that.

It only lasted so long though. Then it started to get in the way. My confidence was poked and prodded each time I was poked and prodded by physios and doctors, and I know now that they were just doing their jobs but at the time it just made things become a lot more obvious that I wasn’t normal at all.

I went on Guide Camp and the only memories I have of those few days away were trying to walk across muddy grass to get to a cold and wet outdoor toilet, and not being able to put my shiny new wellies on by myself because of my splints. I don’t even remember the activities we all did. Not a clue. All that I retained was the struggling. The panicking as I looked at the wooden steps up to where we all ate. Worrying that everyone would stare at me as I awkwardly stumbled my way up. Why didn’t the group leaders know that I’d struggle with that? Maybe they were doing me a favour by making me learn a few home (campsite) truths that would prepare me a bit more for what was to come.

This is why I want to write this article, as a bit of therapy for myself but also for others. Other people have to learn how people are seeing themselves in comparison, a large majority of the time, to everyone else. I don’t mean that kids in school need more opportunities to learn about equality from a slideshow or from a fuzzy video about a disabled child that the school has been showing to every year group since 1987. That isn’t what learning about disability should be about. It’s got to be opportunities to learn first-hand about the real stuff, about their peers that they see-or don’t see-every day. The things that nobody ever would consider to be useful information to anyone. That is what will change attitudes.

That memory of a tiny moment in time when a 12 year old is told they don’t ‘need’ to do Physical Education with the rest of the class, will change things for the rest of their life. Not everyone will want to fight that decision or suggestion and so there begins a string of events where “because I’m disabled” becomes the reason or the answer. If you tell a child they don’t qualify for the same opportunities as their peers, they’ll never seek to be anything but less than equal. Who gets to decide what another person should or should not learn or be involved in?

Ask your kids (if and when you have them!) to ask their teachers, “where are all the disabled kids in the school, why aren’t they playing basketball together with us? Why haven’t they come on this geography field trip with us?”

Get your children to ask how they might be able to make their Guide or Scout Camp easier or more accessible for the kid in their class who desperately wants to join their friends in the things they do out of school.

Isn’t the best way to teach everyone about what might be different or difficult for others, for us all to learn together by asking questions? Honest questions. It has to start with young children wondering quite innocently, how I get into bed? Do I sleep in my wheelchair? How do I get in the bath? If children get answers to these questions as early as possible, they won’t need to sound like a creepy adult, standing behind you in a queue in the supermarket asking “so how do you get on the toilet then?”

They won’t need to tell me how courageous I am and how well I’m doing for keeping my own children alive for 4 consecutive years. Unless they tell every mum that, then by all means, go ahead. Go me!

I’m writing this article not for the children themselves, but for their respective adults. Their parents, their teachers, their postman, their swimming teacher. Everyone is responsible for raising the next generation of adults as open-minded, curious-but-not-nosey, sensitive-but-not-patronising, and altogether awesome adults.

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To follow on from my previous blog post regarding the state of my ‘personal and social care needs’ (wait, I think I just vomited in my mouth), I thought I’d update you all on the still-going-on situation.

After having to nitpick my way at an excruciatingly slow pace through 5 ‘average’ days in order for the panel (seriously it’s like X Factor only slightly more entertaining) to see what exactly I use my PA to help with, I sent the completed sheets back to the social worker. She sent them back. With revisions. Revisions which to the person suggesting them seemed completely fair and reasonable. But the revisions would leave me with crucial gaps where I need help to get things done on the days I don’t work and also on the days I do work.

One particular amendment would have meant that I wouldn’t be able to take my youngest daughter to a playgroup because, surely I don’t need help for every moment of being there. But what toddler do you know who adheres to a timetable of bowel movements or snack requirements? I need physical help to care for my children, they know that. So therefore it is a case of ‘which part of your parenting role is less important?’ Taking your children out to meet other kids and play, or be at home to make sure there are clean clothes to dress them in.

Fast forward a few weeks and the S-Factor judging panel want to know if they could casually chat to my employer about what help my PA provides me at work. And ask them why they can’t just pay for that help. Because surely they can hire someone else completely different just to help me tidy up and lift heavy boxes when other more capable staff do it for themselves? Yes that makes total sense and I have absolutely no reason to think that this intervention would at all make me feel like a burden on my workplace, to stick out more than I already do. Even if this part of the job role was carried out by my existing, perfectly good PA, why should the employer be asked to spend more on having me work for them when I come with this added extra cost? In what universe would it be favourable that they continue to employ me with my plus-one who they also have to pay, when they could just employ someone else, just like my other colleagues, who can complete all of the job responsibilities by themselves?

Wow. I’m seriously wondering if I should even work there myself. I am clearly not a capable person! Maybe I’m beginning to see what the Social Care team are gesturing at. I get it now..

..I shouldn’t have a job. By putting my degree, postgraduate and knowledge of children’s development to good use, for a charity who just want to improve outcomes for young children and families, something I care a great deal about, I am simply putting an extra strain on the economy, the welfare state, the local care trust and maybe eventually my employer?